Hello wise RLS colleagues!Has anyone had Medicare pay for an iron infusion for their RLS? I meet the RLS guidelines for iron infusion, but I have been told that Medicare will not cover it because I am not anemic. If it was covered, can you share with me what code was used? I have had RLS for 20 years, been on every drug in the book, currently on hydrocodone, but I still have RLS symptoms. Iron supplements have only raised my ferritin levels to 75. I really want to have an infusion and see if iron is the source of my problems. I am a third generation sufferer. My poor grandmother was misdiagnosed and put in a psychiatric unit because they thought she was crazy. I sure have times that I think that I am too!
Thank you if you can help me with my question about Medicare coverage.
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Qalba
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Thank you! That gives me hope! Were you anemic? I am being told they won't pay of I am not anemic. Then I was told they will of coded properly but no one seems to know what code should be used!
I’m not anemic BUT those of us with ELS need a serum ferritin level of at least 100 if not more. Mine was 71 when I had the first infusion and it brought it up to over 600. I was doing really well for several years and then started having RLS badly again. Ferritin level had gone down to 51. So I had another infusion this past August.
Hi Marsha I am interested in hearing that your infusion was successful. That gives us all hope. What is your current ferritin level? Did your RLS go away with the second infusion? What is ELS? Is your diet high in iron? For example are you vegetarian or vegan? Sorry to be a sticky nose but I'm sure you would see how significant this is to everyone.
Sorry Marsha I was not trying to be a smart alec by commenting on your typo ELS Had I thought for a moment longer I might have realised that E and R are neighbors on the keyboard. Its just that there seem to be so many abbreviations and false names that my immediate reaction is to expect that I have missed something important.
I've had RLS for 20 years. I augmented and so many had side effects such as foggy head where I didn't feel safe driving a car. Only opioids help, but they only reduce the symptoms. My ferritin is low but I can't any physician to order ian iron transfusion. The RLS neurologist said no because Medicare and insurance companies will not pay for it. I really want to know if iron is my problem. Oral doses of iron have not been helpful, because I can't tolerate a dose or duration long enough to see any increase my ferritin levels. I have tried oral supplements many times. RLS is frustrating enough to add the frustration of uncooperative physicians and health benefits coverage for treatment. I know that I'm not the only one that is frustrated. So thankful for this group!
I must admit iron is my Savior if the right kind is taken in the right way at the right time. I am the naysayer on here who believes ferritin has little to nothing to do with RLS, unless you push it up to 600 and keep it there and even then you will likely still need some opiates or Gabapentin, but probably not as much. I digress, however. The point is, I take ferrous bisglycinate (these days I need a full 50mg) on an empty stomach about an hour before bed or when I feel the RLS coming on - which is usually one and the same - midnight. It obliterates the RLS in one hour. If I were to take ferrous sulfate or even if I were to take the bisglycinate in the afternoon it would do nothing for my RLS. The RLS brain lacks the capacity to store much iron and thus I believe we rely very heavily on that free-floating iron in our blood called serum iron. Serum iron plummets at night, in everyone, but we with RLS can’t handle that drop and that’s why we develop symptoms at night, not really during the day. So by doing what I do, I am literally sneaking my brain/dopamine receptors some much needed iron…at night.
Iron is the grease and glue that keeps our dopamine transport system chugging along. There appears to be a point of no return. If you’ve down-regulated your genetically lousy dopamine receptors with DAs then the iron won’t provide enough relief. If you have certain inflammatory conditions that block the ingress of iron from your GI tract then my little trick won’t work. If you’re taking SSRIs the iron won’t work well enough.
I am confused by your comments on ferritin. Why do you discount the evidence quoted by Dr Buchfuhrer, with the support of the Mayo clinic, that raising the ferritin level might relieve the symptoms of a large fraction of RLS patients at levels well below the 600 figure you suggest?
For some people the relief from an infusion lasts for years. I have not gone back to sources but it seems that there is evidence supporting the claims that an infusion can be effective in many cases. In one case I know well an infusion 5 years ago has provided ongoing relief with no need for a "top up" . No drugs, no brain fog and no augmentation.
In your case the iron infusion might not work and you need to try other paths. In my case the infusion doesn't work but control of my diet does work so I don't take any chemicals. Its a strange disease and we all have to experiment to find a magic formula that works for our body. I don't think people should be discouraged from trying drug free solutions to see if they work for them.
I think the medical experts call it a syndrome because they have a very poor understanding of the causes.
In my opinion an iron infusion should be the first line of defence. If it works then you might have no need for diet or drugs.
That is exactly what I want to do. My ferritin is 75. I want to follow the guidelines. I want an iron infusion. My neurologist is Dr. Walters at Vanderbilt. He is a leading expert and researcher on RLS. He diagnosed me with severe RLS 20 years ago. He diagnosed my augmentation. He put me back on the drugs that caused augmentation at one point. He went through the list of all drugs for RLS twice. He increased dosages. He has tried experimental drugs. I have seen three other sleep neurologists through the years. None of them will order an iron infusion because I am not anemic. They say my ferritin of 75 is adequate and that my insurance will not pay for an iron infusion. I do not understand this! I just switched primary care physicians. He read the RLS guidelines and said he will prescribe the iron infusion. However he said that to get it paid for, he needs to know what code others are using to get it covered. From what I am seeing people getting it covered are anemic. I might have to pay out of pocket but $5000 is a lot of money.
Two months ago I found some research on probiotics and RLS. I have been trying that and my RLS symptoms are reduced. I have avoided all muy food triggers for years. I am interested in what dietary changes are working for you. If I could get of all meds and avoid costly iron infusion and being drug tested for opioids I would in a heartbeat!
I think you try my way first, always. There are numerous members for which this has worked. If low ferritin was a major contributor to RLS then we would have RLS symptoms 24/7/365, not just at night.
Here is Marlayna, she got her ferritin up to 250, but if she misses a night or two of the ferrous bisglycinate she is back to square one. That’s because it’s all about serum iron, not really ferritin:
“MarlaynaHidden1 year agoThank you. I have given up nightly meals and don’t eat after 3 or 4 pm. That definitely helps! Incidentally, when I was taking iron that is not calculated I did not have the same success. Also at one point I was taking too much iron which caused a lot of other issues. Dropping it down to where I am now is working, but I’m sure I could go up a bit in dosage as you suggest and still be OK. I have noticed if I forget two days in a row to take it, I will experience breakthrough RLS. For me at least, iron has been a magic bullet.”
Here is RKM7, when she takes the ferrous bisglycinate every other night she gets break through RLS on the night she doesn’t take the iron:
“RKM7Hidden12 months agoThank you for advising about taking the iron every night! At first I was taking iron bisglycinate 25mg every other night. Then I noticed that I had breakthrough RLS symptoms on the nights I didn’t take the iron. So now I’m taking the iron every night with relief. It’s good to let people know to try it and keep track of their iron panel. I’m also taking Gabapentin and fasting after an early dinner as you recommend. I’m one of the poor souls that was on Requip for about 15 years and experienced augmentation…so maybe iron helps some of us. I think it’s good to let people know this is something to try.”
This is interesting. I will try. I just get such abdominal pain when I take iron! I try different types, different doses. I can try again fasting at night Maybe food and iron causes cramps for me. I appreciate every suggestion.
If your ferritin is really low you should have no problem getting an iron infusion. I think that "low" means ferritin less than 50. Above this and things appear to get a bit difficult as the GP can be accused of ordering an unnecessary treatment and getting punished.
If you identify the city you are in there is a good chance that some contributor to the forum can tell you where they have had an iron infusion nearby. Whether it worked for them or not doesn't matter. All you need is one doctor who will request it for you. Some doctors do it themselves in their surgery but make sure they really have the facilities to handle a bad reaction.
I had to try five doctors before I found one who would cooperate and refer me to a cooperative specialist. Visiting 5 doctors wasn't very expensive "back in those days" in Australia because our government paid for standard consultations. Now it would cost me about $500. GP have had to raise their charges because unfortunately the Government didn't keep the payments up with inflation so that being a GP became a low paying job. Unsurprisingly this has resulted in a shortage of GPs. But that's another story. I had an iron infusion and it cost me about AUD600 but there are others who get it free. Someone suggested $5000 but that is despicable, preying on people's illness. Good Luck
Thank you so much! I am in Kentucky. There are no RLS knowledgeable physicians here so I see a leading RLS specialist in Nashville, TN. I have had neurologist in Kentucky say to my face that they don't believe in research and I should take drugs that are completely inappropriate. Sigh. So fed up! The new guidelines suggest ferritin of at least 100. Mine hovers around 75. I won't give up. The problem with flying to other states to see other specialists is that they can no longer prescribe out of state, especially opioids. My new general practitioner in Kentucky is trying to help me, but hopefully there is a way to get Medicare and my insurance policy to cover it.
Thank you again. Your support means so much to me.
Good morning Qalba, I’m in a relatively similar situation and have decided to move on from my current specialist to Iohns Hopkins restless legs quality care center. There are dozen or so of these clinics stateside and I believe a couple in Europe. See RLS.org for more info.
Sadly , my GP and several other doctors I’ve worked with don’t seem to have a grasp of the state of the art as far as treatments go for those severely affected by RLS. Medical insurers in my experience are even more archaic in their understanding of the condition.
This is why I’m going this route. My hopes are that , my determination plus the experience and successes that these centers have had with getting folks appropriate treatments, will result in my nearly $800/month health insurance actually contributing to a proven treatment!
A lot of these participants within the medical industry would do well to become more educated. I’m not going to wait for that to happen! We can take our power back, (and hopefully with it sleep and sanity!) , by finding those best equipped to advocate for us.
Best wishes , please share what you think and any successes you have! I will be sure to do same
I don’t have Medicare but my insurance would not pay the $5,000 tab. My doc had to change the diagnosis code to anemia, which was not really a stretch. Once again evidence that the medical field doesn’t take RLS seriously.
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